Saturday, February 6, 2010

I just think that I need to go to bed for a couple of days. This afternoon I decided to go in the basement to get a quick nap because I could hide from the kids. Mike was upstairs with the kiddos when Kaidence decided to fall and put a gaping hole in her forehead. We are guessing that sh e tripped and hit the corner off the crown molding on the floor and the corner angle of the banister. Holy cow, I have always known that heads bleed a lot but...........it was EVERYWHERE!!! My boys were panicked and absolutely upset, I thought about it though, with all she has been through she was always cleaned up by the time they saw her. They were very upset to say the least. Kaidence had a cut on the top of her head and the hole in her forehead (and I mean a HOLE). We got plenty of stares from people in the ER because blood was still everywhere. Tonight the ER said they set a record for being the busiest and I believe them. We just needed stitches and it took us 5 hours of waiting. Kaidence did great, but was not happy. They had her wear some heart shaped sunglasses while they stitched her up. She kept saying over and over "no owies". They refused to put her out like they said they would if she were 'normal'. They worried about her heart, BUT she has a beautiful healthy heart now. It just still freaks out the doctors that aren't cardiologist, because she has been transplanted. They stitched up Kaidences forehead in layers and we are now home.

Has this week been long, or is it just me? I am exhausted and I am going to bed!!!

Friday, February 5, 2010

Sorry about the last post. I felt so icky that I just didn't have the energy to post in more detail. I am slowly getting better, and I am SO grateful for that. I just needs a lot of sleep and medication.

Wednesday morning Kaidence had the good old 4AM chest x-ray (oh how we miss those) and then she had her echo later that morning. Both looked good. The stints looked like they were holding. They wanted to keep her there most of the day and then do another chest xray around 4PM. If all looked well then we could go.

So during that waiting time. Mike and I ran upstairs for a 2 hour eye appointment for Camden. We didn't dare cancel, because it took us months to get in. Needless to say, Camden gets to pick out a pair of glasses. He is so excited.

Later that afternoon Dr. Gray came and told us that things still look well and that we could go home. Obviously, we did not need to be in the CICU. I found it interesting that when I took K to the potty in the until she walked by her old room, pointed and said 'my room'. I was shocked! We stayed next door to our old room, in the room that our buddy Ryker stayed in. We thought of him a lot being in there. Kaidence was discharged for the CICU (primary's now has a Cardiac Intensive Care Unit) that evening around 5PM.

So today was a follow up xray to look at those stints. I could see the relief on Dr. Grays face as he told us that everything was still in its place. He was kind. He apologized for the complications this week and said that he knew that it made it a long week of worry for our family as well as all of her doctors. I have a great sense of relief today. We will follow up in cardiology in 2 weeks and check the blood flow to be sure everything is working and that platelets aren't sticking to the stint since it is out in the open. She has been started on baby aspirin to try to help prevent that from happening. Dr. Gray will try to expand the part of the stint that is hanging out of the LPA in her next heart cath in about a year. Other than that no other restriction expect going to Disneyland to ride the rides for 3 months. Shouldn't be a problem since we had no plans to go and do that in the first place (I wish we did though).

So here we are. The week has been long and once again tested our faith in many, to do what was best for Kaidence. This is honestly the first time that I did not know what direction was best for Kaidence. Would surgery be better than a stint that looked unstable and one stint that wasn't even needed in her RPA? I didn't know. I just knew that we turned it over to the Lord, He would know what was best and we accepted that. Thank You for all of your prayers, phone calls and concern for our daughter. Thanks also to my great neighbor and mother in law for babysitting the boys, My Sister for bringing dinner and my other neighbor who brought me a loaf of bread and my Pepsi with a Lime ( I needed it). And MANY thanks to all of our other family and friends for their love and support. We love you all!

Wednesday, February 3, 2010

I only have a second but wanted to let you know that, we are home. Things looked stable with X-ray and and echo. We will check again on Friday. Thank You for all of your prayers and well wishes. We once again feel that the Lord has blessed our family.

Tuesday, February 2, 2010

This K's Dad. Not Telle as usual. I thought I would take a minute and post a quick picture of K back in the PICU. Feels different being here on a visitors visa. Strangely it feels kinda like home. Security knowing she is in good hands. I felt compelled to post this picture to compare with the one on the blog of her Berlin heart. Two years later. We hope and pray everything will work out right for our little K. There is another that could use a few prayers. K's mom is not feeling well and was kicked out of the PICU. She is a little frazzled and doesn't like it when she is not here with her angel. She could use a little comfort and good vibes her way. Hopefully a night of sleep will help her get feeling better. We love ya all and thanks for the support.

Kaidence came out of the cath around 5:45 tonight. I could tell that Dr Gray was not as happy about things as he could have been. They really struggled trying to get that stint placed. They tried numerous times and it kept slipping away. It is somewhat "rigged" for the time being. We are not sure that it will stay in place. If it moves, they will do the open heart surgery tomorrow and remove both stints and patch her LPA andRPA. I guess that time will tell. I have been kicked out of the CICU, because I have strict orders from the doctors to go home and get to bed. Please keep her in your prayers.

They took little K in around 2pm this afternoon. We will stick with the same plan as before and then admit her to the CICU. We will cross the other bridge if we have to. I hate this feeling.....I am nervous and sick to my tummy. I have been sick for the last week and a half, so last night Kaidence's respiratory therapist came in checked me out. She seems to think I have walking pneumonia and now I have a fever. Luckily I have some great friends up here that take care of me and they called my in some prescription. I have been fasting and so I took the antibiotics on an empty stomach, I knew it wouldn't be a good idea and it wasn't. Other than that we are waiting and praying. Today has been emotional for so many reasons. It has been a little rough, but we will get through. Worse things could happen. But I am still VERY worried about my K. Keep you posted.

Please pray for Kaidence. We will be fasting today, if any want to join in. Kaidence's stint has moved form her LPA to her RPA. They are taking her back into cath to place a new stint and try to stabilize the stint in the RPA. If they cannot do so they will take her in for Open heart surgery to cut out the stint and then patch her artery. This would be her 3rd time on bypass. It gets more risky each time you do so. She will be going to cath around noon. Please pray for my little princess. We will keep you posted.

Monday, February 1, 2010

The heart cath went well. She went in at 7:30 and was out at 10:00. They said that everything went perfect. Primary Children's just got some new types of stents. Today they decided to give it a try for the first time, on Kaidence. I heard that Dr. Gray was pretty excited about it. Anyhow, this new stent is pretty cool. It is lower profile, therefore it doesnt need as much room to maneuver. It comes with the stent already attached and therefore you have less problems with it pulling away and ending up some place you don't want it. The coolest thing about is that normally, years from now after all the expanding they would eventually need to place a bigger stent. To do so they would have to go in and surgically remove the old one and then patch things up. However, with this new stent, it will grow with her into adulthood. Meaning it will never need to be replaced....AWESOME!!!!

I feel that once again the Lord was watching over us and what was best for Kaidence. I was frustrated that we didn't get it over with during her last cath, but it just didnt feel right at the time. I asked Dr Gray is it was a blessing that we didn't do it in November and he said 'most defiantly'. He said that with where the stent was needed and the angle it would have been much more risky of a procedure with the old type of stent. This one just worked perfectly for Kaidence.

We will stay the night and go home in the morning. Thank You for your prayers, we can sure feel them in moments like these.

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About Me

I spent 127 Days at Primary Childrens Hospital in the PICU. I was born healthy but became ill after catching a virus that caused my Cardiomyopathy (an enlarged heart). My heart was not pumping and I was dying. We were granted special government permission upon emergency use to implant the "Berlin Heart" an LVAD (Left Ventricular Assist Device) for babies. This would give me more time to wait for a heart. I was the first patient in the state of Utah to receive this device. I received the experimental device in November 2007. It saved my life and I received a heart transplant December 2007, two days before Christmas. My new heart has given me a new chance at life and I am forever grateful to the fammily that gave me my "Angel Heart". Today I am 5 years old and awaiting a second heart transplant due to severe Coronary Artery Disease. My family and doctos were shocked to learn that I needed a new heart once again.
Our little Kaidence is a tough fighter. Our little Fairy of Faith.
This blog documents her Journey of FAITH!